Fleshing out the facts

Welcome to all of the newcomers into the Capturing CF universe. I hope you enjoy your time here.

My audience has widened of late and it has prompted me to think about why I started to blog in the first place.

The short answer is that I’m not really sure! I woke up one day with the desire to begin blogging. So I did.

The longer answer is that articulating a sound bite about how you get CF and how it affects a person is not straightforward. This happens.

Scenario one:

“Oh yeah, I’ve heard of that. That’s where you have cysts on your ovaries, right?

If Dave has ovarian cysts then there is something pretty major he hasn’t shared with me. 

Scenario two:

“Oh yeah, I’ve heard of that. It’s like asthma, right? And some people grow out of it?”

If only that were true.

Scenario three: 

“Oh yeah, I’ve heard of that. My best friend’s grandfather’s cousins’ brother’s niece had a child with that. I think. Yeah. I know all about it.”

I’m going to go out on a limb here and suggest that in actual fact, given your tenuous link to the condition that your best friend’s grandfather’s cousins’ brother’s niece’s child may or may not have, that you are probably not a world expert on the topic.

Scenario four (which actually happened to me during a genetic counselling consultation):

“Oh yeah, I’ve heard of that. (Turning to speak to her partner) So-and-so’s sister had that but she died really young.”

The so-and-so you mentioned just so happens to be my sister. Seriously. To the best of my knowledge, I am not dead. Perhaps you’d better pinch me, just to be sure?

The italicised comments only happen within the privacy of my mind. What comes out of my mouth instead is a non-aggressive list of bullet points which try to summarise life with this multifaceted condition before my listener’s eyes glaze over. There’s about a 60 second window of opportunity. If I’m lucky.

If someone is simply after a definition of CF they can google away to their heart’s content.

If someone is interested in what the avalanche of symptoms and treatments mean in real life then Google falls alarmingly short.

Blogs flesh out the facts. CF is not a one-size-fits-all condition that can be neatly abridged by Wiki and then copied and pasted onto each person living with CF. There is a wide range of symptoms, a spectrum of severity, and as many unique phenotypes as there are people. Blogs also let you know about the people. Their unique challenges, how they cope, their wins, their losses, the hard and easy things, the things that amuse, the things they take pleasure and pride in, their vulnerabilities and fears, the people and the places and the experiences that make life (with CF) worth living. People are more than their condition. They live with a condition, but they thrive in spite of it. I’m doing my bit to flesh things out.

I work as a genetic counsellor and I spend a good portion of my day spouting bullet-pointed facts for conditions like Down syndrome, Edward syndrome, Patau syndrome, spina bifida, thalassemia, Klinefelter syndrome or Turner syndrome. I’m acutely aware that I don’t know what it’s like to live with any of these conditions and that listing symptoms does not even begin to scratch the surface of the experience of the people who do live with them, and thrive in spite of them.

I’ve started reading blogs written by or about people living with other conditions to educate myself. It’s early days in my blog reading career but I want to share one so you can read it start to finish, just like I did. What Do You Do, Dear? is fabulous. Mary Evelyn chronicles her family’s life since learning at 20 weeks into her first pregnancy that her unborn son, Simeon, would live with spina bifida. Simeon is the sweetest little boy ever and he has just become a big brother to Franny Lou. I have learned much. Tracheotomy tubes and swimming are a nasty combo. It’s really hard to put pants on when you can’t stand up or move your legs. Wheelchair = freedom. Mary Evelyn sure knows how to decorate a nursery! Pregnancy can be super scary second time around when the first time was overflowing with anxiety. It’s ok to feel angry or guilty or overwhelmed or whatever and to exist in the microcosm of your couch for a bit if you need to. Humans have a poor vocabulary for talking about things which are different and we are uncomfortable connecting with and celebrating difference. Lime green really makes a front door pop and maps can be used as wallpaper. Do yourself a favour and head over to Mary Evelyn’s blog, navigate to her very first post, and read in chronological order. You may not think that learning about spina bifida is quite your cup of tea, but if you give it a go, I think you’ll end up waiting impatiently for her next post before you know it. Just like I do.

I’d like to hear from YOU. What brought you to my blog in the first place? What keeps you reading my blog? I’m curious to know what someone other than my subjective self gets out of my blog! Comment away!

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10 thoughts on “Fleshing out the facts

  1. I was shocked to learn that Kalydeco wasn’t freely available and the reasons why it wasn’t. Prior to that I had no idea that there were Australians in need of medicine they couldn’t access or the horrible commercial nature of modern pharmaceuticals. I was also completely ignorant of what CF was and how much goes into managing it. I suppose I read your blog because I feel it’s important to be aware of others’ challenges, including those exacerbated by injustice. I felt similarly about Stella Young’s articles.

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  2. Hi Janette– thanks for another good post! As someone with CF myself, I find one of the hardest aspects is not being able to mix with others with the disease due to cross-infection risks. I know your husband has CF too and I’m quite intrigued about that – you’ve obviously decided it is worth the risk and found mitigating strategies. I think it can be hard to make sense of the disease on your own. Although, as you say, CF does affect people in different ways, I find that reading what others with CF write helps me to contextualise and make sense of my own version of the disease. Clearly blog writing, reading and commenting is a form of asynchronous communication that lends itself to reflective thinking. Synchronous forms of communication like phone and Skype are more dynamic and interactive. If blogging us like chess, Skype is more like tennis. All these things can contribute to virtual relationships that start to make up for the handicap of not being able to meet in person. When I was growing up in the 80’s none of this was possible. I am very glad technology has made it possible now.

    Of course there are lots of blogs by people with CF and some are better than others!

    The fact that you are a genetic counsellor gives you a unique and interesting perspective.

    I also like your blog because you tend to pick relevant subjects; you are thoughtful; you write with wit and for the reader rather than self-indulgently; and I suppose I just like your attitude.

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    • Hi Oli. Thanks for such a consideted and in depth reply! Not meeting face-to-face with other people with CF because of cross-infection worries is super isolating. I agree that blogs help overcome the isolation to a certain extent. I read blogs written by other people with CF (some better written than others!) and learn a lot about the condition and treatments and how it affects people differently. As you said, it does help me make sense of things and normalise my experiences. My blog is also a coping mechanism for me, although I didnt realise it at first, and didn’t include this in the post content. I enjoy writing the posts and am glad my readers appreciate them too. Thanks so much for your feedback!

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  3. Hey J. I’m remembering when you had no flesh to disguise the fact you were seriously ill. Our Biafran Baby we used to say, although there was plenty of food available if only your gut had cooperated with the digestive process. Thank God Dr Tan and Pancrease came along. Mumxx

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  4. I follow your blog because my husband has CF and he and I are the same ages as you and your husband. I relate to many of your posts and enjoy knowing there are other people out there with something to say about CF beyond pediatric advice. Thanks for being out there. Keep up the great posts!

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